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Tuesday, January 22, 2013

Our Miracle Girl is Potty Training and Gets Her Cast Off!!

For about 2 weeks now, Kayli has been waiting for hours to pee (in her diaper), then "dumps" and leaks through her diaper. This can be a sign of being ready to potty train, and I wondered if that is what Kayli was trying to do. We have always tried being one step ahead of Kayli, while trying to anticipate which direction she is going (with her abilities). Kayli went ALL DAY without voiding or stooling, so I put her on her bathroom toilet. Within 2 minutes, she stooled and peed in the toilet!!! She is Amazing!!! I cheered for her, and she smiled! I told her what a big girl she is! More smiles!! Kayli never ceases to amaze me.... 32 minutes without oxygen and not only did she survive, but now she is potty training! WOW!!! Thank You God!!! ♥ We put Kayli on the toilet again yesterday, and she went potty again!!! Kayli's day nurse witnessed Kayli's miraculous ability herself! If I did not see Kayli's abilities myself, I probably wouldn't believe it! lol There is so much more to Kayli, than her body allows her to be! Her Spirit is so much stronger than her body, and I am so very grateful that her spirit is carrying her through life! Imagine the things she will say when we find a way for her to communicate with us!!! <3 On another note, Kayli went to the pre-operation appt yesterday for her heel surgery, and the ortho took her cast off! The Dr. said Kayli is healing well, albeit slower than an average rate. The fact that Kayli is healing her fractured bones is a good sign because her bone density has not been impressive in the past. One of her leg bones is "barely there" (very thin), as the dr. put it. The dr. was impressed that she did not have ANY skin breakdown. This is important because we now know that skin breakdown with the spinal growing rods surgery may not be an issue!!! Overall, the dr. is impressed with Kayli's abilities to heal and is planning on surgery to release her heel tendons so Kayli can stand again! Kayli will have the heel release surgery the second week of February! For now, she is enjoying the unrestricted ability to kick her legs! lol

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Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥